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FARAFARA Cure FA

2017 FARA/University of Iowa FA Patient Symposium

2017IowaSymposium 2Upon learning a FA Symposium would be just a state away we knew as a family we had to attend. Our daughter Mekayla had reached out to one of her friends that had never been to a symposium, and we were delighted Emma Joyce and her parents were able to also make it down.

The morning started out with a showing of “The Ataxian”, and it brought home so many different points. From Sean and Kyle experiencing physical struggles during the bike race and sheer exhaustion, to the passion of John and Mike (the other riders on the team) to make up time during the race. The movie showed from the bikers support crew, to the young families featured in the film, it’s a tight knit FAmily with one goal in mind. 

After the movie it was time to move across to the ballroom for a wonderful lunch and meet other families that were there from many different states. After introductions among attendees, our first presenter was Dr. Kathy Matthews, from the University of Iowa, who gave us a refresher course on understanding the disease and the top 6 Care Guidelines (out of the 146 listed on the FARA website) that need to be monitored annually.

2017IowaSymposium 1Dr. Kim Lin made the trip from the Children’s Hospital of Philadelphia, and shared her knowledge on cardiac care and the importance of getting a baseline study for an ataxian’s heart. Next up was our own Jen Farmer, whose enthusiasm and smile, made us feel like we all were the most important thing in that huge meeting room.

The last speaker of the afternoon was Ed Doherty from Reata Pharmaceuticals, and he went over the Phase 2 trial of RTA 408 (Moxie) and that they have completed 9 cohorts with subjects that are devoted to help find a cure. Last thing on the agenda was a Q & A session, with what I believe were two huge takeaways. To make sure you are registered in the Global Patient Registry, and when I asked Jen about the June 2nd meeting with the FDA, her exact words were “I want to be able to call them and cancel the room for 250 people and say I need it for 500!” Let’s go FAmily!

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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